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Policy to Address Important Rare Disease and Health Equity Issues – HES 2022 Session

November 15, 2022

Policy to Address Important Rare Disease and Health Equity Issues was a session at the 2022 Health Equity Summit.

Delays in diagnosis, clinical trial access, access to treatment, implicit bias in diagnosis, clinical trials and treatment. How can policy close these gaps in health inequities in rare disease? How can advocates help in implementing changes in policy?

The RARE Health Equity Summit, hosted by Global Genes in partnership with the Rare Disease Diversity Coalition (RDDC) convenes all stakeholders in the rare disease community to identify collaborative efforts to address inequities in the care of patients with rare diseases, specifically focusing on reducing disparities, discrimination, and biases felt by patient communities. The 2022 Health Equity Summit was held in Atlanta, Georgia, November 9-11, 2022.

Moderator:
Daron Watts, JD
Managing Member, The Watts Group LLC

Panelists:

  • Durhane Wong-Rieger, PhD
    President & CEO, Canadian Organization for Rare Disorders
  • Julia Jenkins, Executive Director
    EveryLife Foundation for Rare Disease
  • Felicia Brannon, MPA
    Co-Founder, MarylandRARE

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